By its nature, neonatology is a knotty discipline, concerned as it is
with the diseases and disorders of newborns. Crises can crop up quickly,
and—for both physicians and parents—the thicket of medical
and ethical decisions is often hard to navigate.

But the last 30 years have seen the clearing of a few reliable paths
through the woods, says John Lantos, a pediatrics professor at Chicago.
Associate director of the MacLean Center for Clinical Medical Ethics,
Lantos has authored two books on bioethics. Due in May 2006 is his latest
such volume, Neonatal Bioethics: A Success Story (Johns Hopkins
University Press). In it Lantos and coauthor William Meadow, professor
of neonatology, trace the past several decades of infant care, weaving
together accounts of medical advances, regulatory oversight, and ethical
reflection.

“What used to take open-ended deliberation by multidisciplinary
ethics committees has now been solved,” Lantos says. “The
complex, simultaneous equations of professionalism, parents’ rights,
economics, and religion that are all wrapped up together have been solved
in the sense that, at least in the U.S. today, we have reached a fairly
widespread, if tentative, agreement on how to do it.”

That agreement on how to parse neonatal-care conundrums evolved simultaneously
on several fronts, Lantos explains. Doctors argued their views in medical
journals; malpractice cases brought the issues into the courtroom; philosophers,
physicians, and other stakeholders hashed things out in bioethics committees;
and the media weighed in on editorial pages.

A typical preemie story, Lantos says—and one made easier by the
last 30 years of negotiation—is that of a 1.3-pound, 25-week baby
on a ventilator. After 24 hours the baby develops a severe lung disease
and cerebral bleeding. The child has a 50 percent chance of dying, and,
if he survives, a 30 percent chance of severe neurological disability,
Lantos posits. The ethical difficulty lies in how to discuss the baby’s
situation with the parents. “A doctor could emphasize the positive
or the negative,” Lantos says. “Both are true, but they lead
parents in different directions. ... Individual doctors have a tremendous
amount of moral freedom. We try to teach them to exercise that freedom
responsibly.”

So as physicians have grappled with the mechanics of keeping ailing newborns
alive, a parallel system of ethics has developed around what to consider
when deciding on care. Generally, that system—an unwritten but widely
respected understanding—holds that no one party is uniquely privileged
to declare a child better off alive or dead, says Lantos, but that all
final decisions should rest with the parents.

At least one component of that understanding, however, is written down;
it’s court record. The 1982 case of Baby Doe, an infant born with
Down syndrome and esophageal atria, firmly established the primacy of
parental prerogative, Lantos says. After hearing contradictory prognoses
for surgery to fix their infant’s malformed esophagus (which, untreated,
left the baby unable to absorb food), the parents refused consent for
the procedure. Pediatricians filed a lawsuit charging neglect, but state
courts disagreed. Before the U.S. Supreme Court could hear the case, Baby
Doe died.

Out of the ensuing controversy—intensified by the 1983 birth of
Baby Jane Doe, a newborn with spina bifida and other complications whose
parents, also facing conflicting medical advice, opted against treatment—emerged
detailed federal regulations for treating newborns with congenital birth
defects. Those were struck down, but in 1984 Congress voted to add the
denial of fluids and nutrition for infants with birth defects to the federal
definition of child abuse. That law has held, and Lantos says the situation
yielded vague limits on what treatments parents can refuse; they can deny
care that is “futile,” but nowhere is futility specifically
defined.

Today infants in the neonatal intensive care unit (NICU), Lantos says,
fall into three categories: full-term babies with an acute medical problem,
babies with an unfixable congenital anomaly such as Down syndrome, and
preemies. While the first two groups prompt issues of resource allocation
and quality of life, premature babies present a particular challenge,
he says, because their outcomes are uncertain.

“Presumably, if knowledge is the criteria, then doctors know best,”
Lantos says. “But if you go down that slippery slope, you end up
in a situation where doctors extend their authority beyond their expertise.”
A physician can say that if a newborn survives, his IQ won’t rise
above 30, but a doctor cannot judge whether that life is worth living.

Some physicians fear that parents don’t fully grasp the complexities
of neonatal care, and that—the Baby Doe cases notwithstanding—parents
will want to try any treatment to save their child, despite the emotional
and economic costs. But studies have shown that parents do understand
the complexities; sometimes they simply disagree with doctors. Not often,
though: Lantos says conflicts between doctors and parents are rare.

Yet media outlets amplify the disagreements. According to Meadow, the
NICU is often painted as a chaotic place. “The general tenor of
most of what is written about ethics in the NICU is that it is sort of
whimsical, haphazard, and worrisome from a societal point of view,”
Meadow says. For example, in the 1983 book The Long Dying of Baby
Andrew, parents chronicled the life of their premature son and their
struggles to get reliable information on his condition. Although such
devastating cases make headlines, feed memoirs, and influence public opinion,
most NICU dilemmas are less black and white. So are their solutions. As
with Lantos’s hypothetical 25-week preemie, the usual predicament
is discussing the situation with parents, who often are more optimistic
and rate the baby’s quality of life with a disability higher.

Not everyone cheers the broad agreement Lantos and Meadow describe. Decrying
the state of neonatal bioethics, some parents insist doctors are focused
more on the newborn than on parental concerns, while some neonatologists
argue parents should have less control. Some policy makers deem NICUs
a bad investment altogether.